What Does Living Well With CLL Mean?

Published on
March 28, 2016

Topics include:
Living Well

It’s easy to focus
on getting or staying physically healthy, but what about your overall
health? Patient Power Founder, Andrew
Schorr along with CLL patient and patient advocate Jeff Folloder and MD
Anderson Cancer Center physician assistant Jamie Lynn Gibbons share what living
well looks like from each of their perspectives. Listen as Jamie discusses exercise, Andrew
shares his holistic view, and Jeff describes his version of stress-free
positive thinking.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Okay. So part of the team is Jamie. So I want to
just while we’ve been discussing this, we all want to be more in control. That’s why you’re here. What can I do? What can I eat, etc.? So, Jamie, there are other things though,
even for fatigue, that can make a difference like exercise, right? I mean
hasn’t there been research that a cancer patient, even one who feels very
fatigued, exercise? And that doesn’t mean running a marathon. But it’s to the
good, right?

Jamie Lynn
Gibbons:

Yes, definitely.
As I’ve become more familiar with CLL, and now kind of as my general
clinical assessment when I see patients is kind of asking them what their
physical activity level is right now.
And if it’s really not that much or they don’t have a specific routine,
I say let’s maybe try to have a game plan for between now and the next time we
see you.

And it doesn’t have to be running a marathon. It
can be going for a walk after dinner. It could be, if you have co-morbidities
or arthritis, going to the pool and doing something there, so it’s not hard on
your joints. So it’s about finding something to increase it to a level that
you’ll be able to manage. But it’s definitely something I recommend with almost
every single patient.

Andrew
Schorr:

There’s one other thing I wanted to bring up
about living well with CLL. You want to
live well. Let’s leave out the CLL for a second. But it dominates our thoughts sometimes. And,
Jeff, I want to ask you about this. So I
was seeing my local oncologist in Seattle. And one day, he said, “Maybe you
should take a baby aspirin.” And I said, “What are you talking about?” He said, “Well, maybe a good idea for overall
heart care, etc.” I, eventually,
developed another condition, myelofibrosis, where it maybe wouldn’t be such a
good idea.

But before that. And I said, “But I’m a cancer
patient.” He said, “Yeah, but I’m also an internist. And I’m thinking about you
not just as a cancer patient but as a whole person.” We can have heart disease.
We can have diabetes. We can have
arthritis, etc. Jeff, you’re doing well with your CLL, but you’re trying to
take care of your overall health.

Jeff
Folloder:

Absolutely.
I was listening to all of the doctors speak. And I was like yeah, I did
that, I did that, I did that. And Dr.
Keating told me you can have your Scotch. You can have your Blue Bell ice cream
when it’s available in the stores. Just
don’t go nuts. Well, all the stuff that
I was doing to make myself feel better, have that bowl of Blue Bell, wasn’t as
important as what you talked about earlier, the mental health part of it. All that walking that I’m doing is great. But
the fact that I’m doing the walking in the morning without the headphones, with
the ringer on the cell phone turned off, no text messages.

It’s just quiet. That’s my hour-and-a-half or two
hours every morning to get reset and prepared for the day to push out all of
the bad stuff, bring in the good stuff, and, actually, be ready to be a real
person all day long.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.